Four-year-old Adele Pearce hoping for Christmas at home in Lethbridge

A four-year-old from Lethbridge living with a rare genetic condition is hoping to celebrate Christmas out of hospital and at home with her family.

Barwon Health patient Adele Pearce, who has multiple chronic diseases, is hoping to spend Christmas at home this year with her loved ones. Picture: Alan Barber.

A four-year-old from Lethbridge is hoping to celebrate Christmas Day at home after spending the last few holidays in and out of hospital.

Adele Pearce was diagnosed with alagille syndrome (ALGS), heart disease and liver disease as a newborn.

ALGS is a rare genetic disorder, affecting approximately one in 45,000 people, according to the Liver Foundation.

Babies born with the condition have fewer bile ducts than normal, causing build up in the liver and resulting in liver damage.

Adele will celebrate her fourth Christmas on Wednesday, with her mum Bec Pearce crossing her fingers for a day at home with loved ones.

“Every Christmas really means a lot to us,” Ms Pearce said.

“We were told when Adele was very young that she only had a 50 per cent chance of making it to five years old and she’s nearly there.

“So every Christmas the whole family gets together and we just make the most of it.”

Ms Pearce said the unpredictability of Adele’s condition meant the family treated every day as a blessing.

“With alagille syndrome, some people live until they’re in their 40s, some people only live until they’re three years old,” she said.

“We just look for the positives every day, because we never know what the next day is going to bring.

“When she’s well, she’s really well, but when she’s sick, she’s very sick.”

Bec Pearce and her daughter Adele. Picture: Alan Barber.

Adele has received treatment at Barwon Health since she was a baby, with her longest hospital stay lasting three months.

“(Adele) is definitely used to the hospital,” Ms Pearce said.

“(Barwon Health) has been absolutely incredible, even saving her life at one point.

“We will always be indebted to them for that.”

Ms Pearce said Adele will need open heart surgery in the near future, as well as a liver transplant.

Despite managing ongoing health challenges, Ms Pearce said the four-year-old was always smiling.

“(Adele) is such a happy child and very cheeky,” she said.

“She’s also very strong willed, and that comes out in her personality.”

Barwon Health is hoping to raise $250,000 this festive season through its Wish Upon A Star Appeal to fund vital medical equipment to support sick children like Adele.

To donate and learn more about the appeal, visit the Barwon Health Foundation website.

Originally published as Four-year-old Adele Pearce hoping for Christmas at home in Lethbridge